Favorite Resources?

[SteelerGal]

In the past 4 months, I have gone through lots of blood and stool tests, endoscopes, colonscopies and an MRI. Still waiting for the MRI results, but the only thing we can come up with is malabsorbtion. My doctor has advised not to eat gluten. I am feeling a little better, but still nauseous, bloated and extremely tired. I started taking Vitamin B complex to help, but I just want some relief! 

 

Seems like most cut out dairy as well? Maybe I have not successfully cut out gluten? (maybe it's hiding in things I didn't think about).

 

What are you favorite resources to help you feel better?

 

Thank you!

[kareng]

Were you diagnosed with anything?  Celiac?  Because, if its not Celiac, then cutting out gluten might not be of any help.

[SteelerGal]

Were you diagnosed with anything?  Celiac?  Because, if its not Celiac, then cutting out gluten might not be of any help.

Only thing I've been diagnosed with is malabsorbtion. Everything else (including MRI now) have been normal. SO frustrating!!!! 

 

Cutting out gluten has helped some, but I still have my symptoms. i am not sure what else to cut out of my diet (if that's even going to help).

[GottaSki]

Only thing I've been diagnosed with is malabsorbtion. Everything else (including MRI now) have been normal. SO frustrating!!!! 

 

Cutting out gluten has helped some, but I still have my symptoms. i am not sure what else to cut out of my diet (if that's even going to help).

 

Welcome!

 

Did that doctor by chance -- run a full celiac antibody panel BEFORE telling you to remove gluten from your diet?  I hope so. 

 

You need to be actively consuming gluten for celiac antibody tests to be accurate.

 

Hang in there....and keep looking for answers

[Adalaide]

I also wonder if they actually did an appropriate biopsy. Just because they did an endoscopy, does not mean they did a biopsy for celiac, or if they did that they did it correctly. Some morons... I mean doctors... go in, don't see anything wrong and so don't bother with the biopsy. Or don't take enough samples.

[GottaSki]

PS...forgot to answer your original question.

 

The best resource for all questions with regard to Celiac is the University of Chicago's Celiac Center -- they are pretty good at providing info for those with Non-Celiac Gluten Sensitivity as well.

 

The center's FAQs are a fantastic resource:

 

Open Original Shared Link

 

If you are looking to tighten up your gluten-free diet -- this thread is a must read:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Harpgirl]

I also wonder if they actually did an appropriate biopsy. Just because they did an endoscopy, does not mean they did a biopsy for celiac, or if they did that they did it correctly. Some morons... I mean doctors... go in, don't see anything wrong and so don't bother with the biopsy. Or don't take enough samples.

 

I'm one of these unfortunates that had this kind of moron doctor. By the time I figured out that it could be celiac, we'd already done an endoscopy. Furthermore, I had to be the one to bring up celiac at all! So much for being a "specialist." Grr.

 

Anyway, some people also do a paleo diet for a while then slowly reintroduce allergens to see if they have a reaction. You may try that. 

 

Personally, the things that I find that help are heating pad on my belly for pain, peppermint tea and/or apple cider vinegar water for nausea, and a small glass of wine for cramps (though I'm told you need to wait for your body to heal initially before consuming alcohol). I don't get the big D, Just the big C, so I also take a prescription laxative.